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The Comedy of Errors Continues 🤷🏻‍♀️

So now I find myself in my friend's car, being rushed to the Emergency Room. The mere thought of the hospital puts me into a tailspin, because I am deathly afraid of needles. However, I knew even at that moment, I could not wish this away. I was in big trouble. Amantadine had inhabited my soul and was not letting go. After having blood work and other various tests done, they determined that I was severely dehydrated, courtesy of Amantadine and its extreme side effects,. Let us not forget the fact that I was pulled off of it cold turkey! Oh yeah.... And I was overmedicated. No surprises there. Normally you wean off of this medicine, but Dr. 5 1/2 obviously felt weaning me off would do more harm than good. My poor little body went over the edge! Two IV fluid bags later, I was released and ordered to rest. No problem there!


My ER visit happened in mid July. My next appointment at the PI (with my new Dr.) was not until mid August. Dr. 6 was on Maternity Leave until then. Unfortunately, my body was still under attack from PD, as it seemed that no one Dr. could get the meds dialed in correctly. The side effects from Amantadine were gone, but I was exhausted and very depressed. I also felt extremely apathetic and spent a lot of time in bed. Although I still felt horrible in every way, I somehow mustered up the strength and will to make it to my August appointment. Enter Dr. 6....


According to Dr. 5 (who had changed my diagnosis from PD to CorticoBasal Syndrome), he was leaving me in good hands with Dr. 6. She would be the one to solve all of my problems, as he told me that CBD is her area of expertise. Dr. 5 had given me what I thought was a very clear description of what Dr. 6 would be like. However, she was not at all what I had pictured. He said she would make me laugh with her sense of humor, but I found her to be extremely serious, quiet and right to the point. I told her all about my adventures in the ER and she seemed very surprised that my care (or lack of care) had gone on for this long. She also seemed surprised that I had gotten so sick from the Amantadine. According to her, most people with PD tolerate it really well. I am not most people. To be perfectly honest, I do not really remember what happened during that first meeting with her, but unfortunately the second meeting did not go well at all.


Between meeting 1and 2 with Dr. 6, the Parkinson's Institute moved to a temporary location, until their new building was ready (the original clinic was being torn down). I do remember the second meeting because it was as ridiculous as ever. First of all, the powers that be had let many staff members go, with no notice to us. When you have been diagnosed with a life altering condition, you would hope that there was at least some consistency in staff members. I had grown to really love some of the people who worked for the PI, but they had either left on their own or were let go.


I had a friend drive me to the new location. I told him to just drop me off in front and I would text him when I was done. Keep in mind that the right side of my body still felt completely detached and my right arm was very rigid and weak. The other issue was my balance, or should I say, lack of balance. Opening the front door of the new office was like opening a dungeon door that weighed 500 pounds. WHAT?? Are you kidding me? There was no wheelchair access let alone anybody from the clinic to help get patients inside. Once I finally got the door open enough to squeeze inside, I had to time it so that I got my whole body inside before the door literally hit me and knocked me down. I sat in a dingy waiting room with boxes everywhere (I will give them a pass on that one, as they had just moved and were very understaffed). When I met with the Dr.and told her that there had been no change in my body since our last meeting, she pretty much threw her hands up in the air like she had resigned herself from my case. It was clear to me that she did not really know what to do, because pretty much every medication I had tried had horrible side effects. I left there that day vowing never to go back to the PI again. Sadly, after 39 years of service and care to the PD community, they closed their doors forever in December 2018.


At this point, I had been thinking so much about Dr. 3, who had given me the PD diagnosis and had cared for me until she left to open her own Concierge practice. I decided to email her to ask if she knew of any great Movement Disorder Specialists, who could help me to get better. She responded by inviting me to come in and meet with her. To be Continued.....


Perseverance on my part is what it will take to get better 💜


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